Category Archives: cystic fibrosis

JANUARY 17–In the Redwood Forest

Below is a screenshot of Caitlin’s Instagram from our trip home in September, 2015, when she got to visit the Prouty Garden one last time.  As I’ve mentioned, the current Children’s Hospital administration made their decision to cut down/kill the Prouty Garden’s 65 foot Dawn Redwood tree this past December, the same day Caitlin went on ECMO.

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The dawn redwood is in the middle rear of this pic

Today, in Caitlin’s honor, Nick and I visited the Muir redwood forest here in California.

The last movie that Caitlin saw was at the Carnegie Science Center a few months ago, the recent “National Parks Adventure” at the Omnimax. From CNN’s review of the film:
Two of the most integral figures in national park history are also honored in the film — conservationist John Muir and President Theodore Roosevelt, who convened in 1903 at Yosemite National Park. Their famous three-day camping summit under the stars in a giant grove of Sequoia trees is re-enacted by a pair of dedicated tribute actors.
“That meeting [between Roosevelt and Muir] is often regarded as the most important three days in conservation history, so we knew we had to include it,” says MacGillivray.

“They believed that nature was of spiritual value, and that you could get more out of it by not changing it. It was a unique point of view then — and one that people might take more for granted now.”

Like anything so natural and overwhelming to puny beings like us, photographs cannot do justice to how it feels to walk there among our earth’s tallest living things. But if you’ve never been, try to go in this lifetime. The forest is like a cathedral–hushed, and filled with shade and light.
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Nick and a redwood

At one point, Nick opened his knapsack and took out the photo of Caitlin that he’s been carrying on this trip.

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This is quite a large photograph but looks like a 3×5 against this tree.

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He also brought the religious gifts various people had given to Caitlin while she was sick and which hung on her IV poles in the hospital and during her surgeries.

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It’s 4 weeks today, exactly, and as I write that, it hits me all over again that it is true.

But Jess is here, and we love her. And we saw Kenley, too, last night. And read aloud a wonderful note we received from the kids’ former headmaster at Fay. And basically went on living, as impossible as that seems to be to do.

–M&N

JANUARY 16–Ropes Course for Souls

Big Sur. I had it in my head that we needed to get here.

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Fairy Ring of Coastal Redwoods

The glorious, big days are somewhat easy here. Night is still night, and nights are hard. At 2am the night before last, after getting a dozen messages from people telling me of signs they were sure they received from Caitlin’s soul, I thought, okay, I’m going to ask for a hard sign. I want a monarch butterfly to fly around me in a complete circle. Tomorrow.

And yesterday we went to Esalen for massages and to experience their famous hot sulphur springs.

Time has been a strange thing. Sitting in the hot water with the sea crashing below, all I could think was, Exactly four weeks ago today, Caitlin was in surgery and we were so relieved and happy. And now I am at Esalen, a place that seemed like Neverland.

Nick loved the energy at Esalen and afterward, went to look at the big farm garden there. I sat in an Adirondack chair overlooking the Pacific and I thought about the end of Mad Men and how I wanted Caitlin to see that I was there and a couple of monarch butterflies began flying all around… not right around my face, the way I’d envisioned, but in big swooping circles that took in much more than me.

A few people have said they enjoy reading Caitlin’s thoughts so here’s something relevant, as we all face the coming week.

From: Caitlin O’Hara <caitlin.ohara@gmail.com>
Date: October 2, 2016 at 10:31:46 PM EDT
To: andrew
Subject: Wow read this

https://www.washingtonpost.com/national/finally-someone-who-thinks-like-me/2016/10/01/c9b6f334-7f68-11e6-9070-5c4905bf40dc_story.html

With my big book, Sarum – that I’ve been reading that traces England from beginning of man to now — to this new book I’m reading – which does a similar thing with the slave trade and is already so so so good and opening up news ways of looking at slavery (for me) I just feel like plus alongside this election, which is challenging everything I took for granted ..::it’s an interesting and weird time to be alive and experiencing. I can’t help but imagine these times in the past that I read about, and then think how the time we live in now will just be something that happened to someone else, in the future….It will be this weird blip in history that is a forgone conclusion because it’s over, it’s sorted out. We learn about bad things that happened and somehow they don’t seem quite as unbelievable because the people in the future have figured out why it happens, and we know the ending.  I hope it doesn’t happen soon, but at some point the US will no longer be around, or it will be much different than it is now. And it won’t seem weird to people reading about it in history books. We will just seem like the dumb idiots of history who elected trump. Like the sheep in Germany who followed hitler. A question on a test somewhere. We parse the decades out and they all seem so different

– when I read Sarum I have a tendency to do a double take when things are different from say 1650 to 1690—when the area in the book has undergone a huge change. But of course in our modern history entire revolutions and wars happen in shorter times. Countries fall. We are all the same and we all have a collective fallibility and vulnerability. It can happen to any country and any place … but we also are all the same in that we never seem to really learn from history or believe WE are the ones making mistakes.

It’s part of why the idea of souls makes sense to me. This place is just like a ropes course for souls. A learning center. It never changes and the collective body of humans can never sustain their progress too too much or else there is not enough to challenge the souls. Imagine all the people living life in peace ✌️ John Lennon – well that wouldn’t really work if you believe we need to be challenged to grow. At least in the human form.

 

 

** The slave trade book was Homegoing, by Yaa Gyasi

Sarum is by Edward Rutherfurd

JANUARY 13–Glowing in the Dark with Mary

We have been here a week—feels like much, much longer. The rains kept us from going straight to Big Sur as we had planned, but that turned out to be a good thing. We were made to live inside the moments we found ourselves in. We did things we hadn’t planned to do: see Malibu and Beverly Hills and Santa Barbara and Miles-and-Jack country.

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..and just a flutter of, like a nutty Edam cheese

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Spirit Bear for Caitlin and for Gary Richardson

Strange, small-world, meaningful fact: our wonderful neighbors from Pittsburgh, Mary and Ralph, actually own a place just down the beach from where we stayed in Santa Monica. All this time, when they would go to CA, I thought they were somewhere else. (Never having been here, I didn’t have much of a map in my head.)

So we got to visit with them a bit. And that was surreal and healing and very, very good. They are kind friends who will always be in our lives.

Another Pittsburgh–now life–friend, the wonderful writer and soul, Jane McCafferty, has been so supportive with her words and thoughts and the other day wrote, “If you have a favorite saint, or a connection to Jesus, try calling on that now— in my experience this can be real medicine.”

I liked that advice and realized I’d already taken, like Caitlin, the stoic Mary as my own. At the last minute, I had packed the tiny glow-in-the-dark Vierge Marie that I purchased at Chartres when I visited there with Caitlin in 2004. After another 2am bad dream last night, I’ve decided I’m going to keep her glowing figure on my bedside table from now on.

I have a feeling that the real Mary would not have taken herself too seriously, and thus wouldn’t mind this version of herself.

Light inside darkness is always a good thing.

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La Vierge Marie

As soon as we arrived here last week, I realized I had to buy a stronger chain for Caitlin’s bird ring. I didn’t trust the one I had, but I did trust that I would find the right thing at some point, and as Nick and I were walking up the main street in Santa Barbara the other day, I glimpsed a store that looked to be full of necklace chains. Nick walked in and bee-lined straight to the perfect one. The right length, the right color. “Look up,” he said.

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I began to see her everywhere, of course. Even in the most unlikely places.

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And also in very likely, lovely places, like this stunning stucco church in Santa Barbara called Our Lady of Mount Carmel.

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St Francis and his birds and Mary

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Mary and 65 Roses

She is everywhere, once you know to look.

 

–M

 

PS:

Beautiful song sent by Jane.

 

 

 

 

JANUARY 11–Zooming Out w/Caitlin, post-Obama

Here in California, I’ve been waking up way too early—4:30 or so, and now that Nick and I are finally together again, I try to be quiet for his sake. But the sun doesn’t rise till 7, and those dark hours can be terrible. This morning I tried signing onto Facebook, but all the bleak posts about last night’s farewell speech made the day (life) ahead feel particularly despairing.

I was thinking about the fact that Caitlin had had so much meaningful correspondence with others over the past two years. Recorded correspondence. I have little of that, obviously. Our conversations of the past three years–her most contemplative time–were all in real time.

In the dark it’s easy to panic, and that’s what I did. I was seized by this urgent need to scour through her Gmail and find all of her writings until I realized: I can’t just read through her private stuff.

Then, literally then, I got an email from Andrew, a forward of an email from Caitlin this past July where she had linked to an article she admired and talked about her own perspective. With his permission, here it is:

From: Caitlin O’Hara <caitlin.ohara@gmail.com>
Date: July 25, 2016 at 10:20:47 PM EDT
Subject: Zoomed out

This sums up everything I think about the state of the world and life and how I think – only this guy articulately wrote it and has all the facts at his fingertips to back it up. I am only an amateur historian. With all I know cobbled together from years of art history combined with an obsession with organizing time in my head – decades, centuries, eras. The entire thing has always been a visual structure in my head. Some day I will draw it for you. When I picture us now in 2016, I pull back. I always pull back and picture myself in time and in space geographically. It makes me removed enough (like this guy) to ultimately not feel that there is much I can do to change the shifts of the world, but also inspired enough to think – what is my role in this lifetime (whether it’s my only lifetime or one of many, doesn’t matter) to survive this time?  

I am fascinated by this kind of thing. By the ebbs and flows of history. By patterns and by people and all of the stuff he talks about. I guess it’s harder for many people to think in that zoomed out way. For me – it was a mechanism I cultivated as a way to deal with being sick … I’d zoom out, see my own smallness, realize it’s all been done before and will be done again, and I could relax, and enjoy my life now.   Like why I like graveyards. And reading about the holocaust. I like reading and thinking about the ebbs and flows of human suffering, living, dying, living again…

History Tells Us What May Happen Next

I don’t think it matters if this guy is “right” about brexit or whatever the defining moment will prove to be…or even if this time really will end up being a catastrophic time (ahead of us). I kind of feel it might be. But I think his way of thinking is a good one that I relate to a lot. And wish more people did. But then, we wouldn’t have the same world ….

Love my Andy.

I’m going to renew my Irish passport. In case we have to skip out of here. ❤️✌🏼️

Sent from my iPhone

And here are some random things we sent to each other:

 

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From Patry Francis’s Instagram xo

JANUARY 9–Portals to Real & Close

After I wrote about signs the other day, a line I wrote in Cascade came to mind, to haunt me:

That was the thing about signs. You could read them any way you liked.

I thought about that as I went to get a pedicure in my hotel. I actually don’t really enjoy pedicures. I consider them to be maintenance, and I like them to be quick. Well, this was the slowest one in the world—-it took almost 2 1/2 hours. I tried to relax and enjoy it but all I could think of was how horrible and ultimately needless had been our darling girl’s partial amputation. I kept picturing us getting pedicures at various points in our life, at MiniLuxe in Boston, or on vacations in Miami, and later, when she had to drag the oxygen tank in with her. Her last pedicures I did myself, on her bed, because she no longer had the energy to go to a salon. The past year, I gave her leg and foot massages almost every day because it was the only thing that gave her relief from the near-constant painful aches she experienced.

I spent a lot of time with those legs. I have been mourning that left leg perhaps more than I should. I didn’t want to start crying in front of the pedicurist, so I tried to distract myself and halfheartedly looked through the basket of predictable women’s magazines. But—a surprise. Tucked in there was a New York Times Magazine from the end of November, with a cover story on Martin Scorsese. I’d brought that particular one into the hospital to read, and to give to Caitlin, because she had a deep appreciation of his movies. When she went on life support and we had to clear out her room, it must have been thrown away.

I’d forgotten about it.

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On Faith:

“In his new film, “Silence,” Martin Scorsese returns to to a subject that has animated his entire life’s work and that also sparked his career’s greatest controversy: the nature of faith.”

I read the article with interest and an ache in my heart, wishing Caitlin had been able to read it and discuss it with me. I wondered what she would have thought of the film. It seems to have received quite mixed reviews, but Caitlin’s opinion would have been the opinion I would most been interested in. She had a keen ability to analyze and to consider, with empathy, the most complicated subjects. See things other people didn’t see.

It’s a wonderful thing when your kid grows up and you can step back and marvel.

Her first day in the CTICU, when she was still able to speak, her nurse mentioned having been to Mass the day before.

Caitlin: “Do you believe in God?”

Nurse: “I do.”

Caitlin: “Why?”

Nurse: “Why not?”

I wish I had the ability to remember, in detail, all that Caitlin said, but basically she talked about how she believed in something greater but thought that the various religions hadn’t gotten it right.

Now I think: Now she knows. All the stuff we talked about is no longer theoretical for one of us.

And I’m going to have to figure out faith for myself.

Backtrack: ‘Have Faith’

When Caitlin was 11, we realized, nearly overnight, that a stealthy mycobacterium had completely ravaged her left lower lung. The lobe needed to be removed. It was the only hope of stopping the organism from invading the rest of her lungs. There were many unknowns and absolutely no guarantees.  One day, before the surgery, I was sitting in my living room sobbing, sick with fear and dread, when I heard a voice—-clear and strong and female. The voice said, “Have faith.”

I sat up straight and looked around.

I thought about how it would be very easy to doubt what I had heard but that I must always remind myself that I had indeed heard it.

During these past 3 years, I hoped to hear that voice again. I never did. One thing that did happen, though, was that about a year ago, I was doing chest PT on Caitlin when I heard her voice, not her real voice, clearly say, “I’m dying, mum.”

I tried to unhear it. Tried to “have faith.” Hoped that that long-ago voice had been ‘good for’ forever.

Caitlin wrote about faith here in November:

Tolstoy had an existential crisis where he couldn’t figure out how to have faith…and decided the only logical thing he could do was to kill himself –  He spiraled out of control… he couldn’t think himself out of the problem of living, the meaninglessness of life, and the uncertainty of faith. He thought that if life had no meaning, which his reasonable mind believed because he could not prove the opposite, then the brave thing to do would be to end it. But he did not want to kill himself at all. He finally found his kernel of faith exactly right in front of him. His desire not to die, to keep on living despite the fact that he KNEW he was going to die, was a kind of miraculous leap of faith that we all do every day when we wake up. He figured the fact that faith even exists at all makes it a truth in and of itself. And he went on. (you can read this in his “A confession”).

I finished reading the Scorsese article as the technician finished the pedicure. Then I went out onto the beach. Down near the water stood a big flock of seagulls. I started to pass them, telling myself I couldn’t desperately look at every seagull you see, hoping for a sign.

But I turned to watch them anyway, and saw that the one closest to me was standing on one leg. He stood on it for so long that I thought perhaps he only had one leg. None of the other gulls were standing like that. I kept watching and waiting for him to move and found myself getting all choked up and happy and talking to Caitlin. She felt real and close for those moments and I thought, This is what you’re going to have to do: take whatever portal is open, whenever you can. 

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A Santa Monica gull

–Maryanne

JANUARY 4 –Bird and Bindi

I can’t even begin, right now, to sort out all of the almost supernatural occurrences of the past weeks, write them down, pass them on. I know I am meant to sort all of it out, in words that make sense, to ultimately help other people. And I will do that. But right now I’m super tired.

Still, to remind those who care: there is work to be done. As everyone has been informing me, France is now one more “opt-out” country—-meaning you’re an organ donor unless you opt out. We are going to work on fixing as much of the broken transplant system in our own country as we can. I’m grateful to everyone who has volunteered to be part of the army, and we will be in touch.

For now though, Nick and I are going to California. My wonderful brother will be warming the hearth fires here, minding our house, so we don’t have to worry about leaving it untended. Caitlin’s tree will be up through Twelfth Night and beyond.

California is a place Caitlin and I had planned to visit ‘after transplant.’ (How easily that phrase had become part of our everyday conversation; seems sad and naive now, but I’m grateful for our optimism. It kept us going.)

Oddly, neither she nor I have/had ever been to California, so we will take her with us in the only way we can: spiritually. We will drive up the Pacific Coast Highway, stay in Big Sur, and eventually visit Jess in San Francisco. We will see redwoods, and honor the one so foolishly cut down by the arrogant and sorry young souls who make up the current administration of Boston Children’s Hospital.

A few years back, in her beloved Paris, Caitlin bought herself a tiny, bird-shaped ring. It became one of her most treasured possessions. I just couldn’t bear to put it into the

<< coffin, horrid word>>

Instead, I’ve tied it to a necklace of mine. I added a red bindi from the little sticky-pack Jess brought back from India. I put the bindi in between the bird’s wings. I will wear it on our trip and Caitlin will be with us up at Big Sur and in San Francisco with Jess, and with us among the redwoods that stupid humans haven’t yet destroyed.

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Bird and bindi

My niece Emily wrote this to my sister the other day:

Know what’s so strange? A few days after Caitlin passed I heard this poem called ‘the art of losing’ on an NPR podcast and it felt really significant to me so I looked it up and saved it and now I’m sitting here reading the writings in Caitlin’s pamphlet from her service and that poem is in there

Later, my sister wrote:

Today is my first day back at working out. I always put in a podcast to keep me on the treadmill and it turns out the first one in my queue was the one that ends in that poem. ❤

These are the coincidences that are not coincidences.

The only omission in the service program was the title and author of the quite-famous  poem–which is actually a form of poem called a villanelle, a form that itself, is very hard to master….

ONE ART

by Elizabeth Bishop

The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.
Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn’t hard to master.
Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.
I lost my mother’s watch. And look! my last, or
next-to-last, of three loved houses went.
The art of losing isn’t hard to master.
I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn’t a disaster.
—Even losing you (the joking voice, a gesture
I love) I shan’t have lied. It’s evident
the art of losing’s not too hard to master
though it may look like (Write it!) like disaster.

–Maryanne

JANUARY 2–Blue Moon

It is a quiet house here tonight. Jess is on her way back to California. Andrew has gone home to Maine. It was a difficult day. We were going to go into the Boston apartment but never did make it out of the house. All I could do was flop from one surface to the next and cry. I mainly lay on the couch in the family room near Caitlin’s tree, TV tuned to a favorite movie, long-ago DVR’d, which Caitlin and I watched half of this past summer when we were home. The Remains of the Day. One of our favorite movies, one of my favorite books.

I let it play on from where we had left it in August, midpoint: all the melancholy of Mr. Stevens’ trip to the west country to try and reclaim all he had lost. The meeting, after 20 years, between Miss Kenton and Mr. Stevens is all about regret and the inability to change the past– ‘Blue Moon’ playing in the 1950s background, all that poignant, post-war sadness.

It reminded me that before Andrew left today, as he packed up his truck, he found a note from Caitlin in his glove compartment, a reminder for all:

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